APRIL 2021
SAMANTHA’S STORY
Opening herself up to the MS community
ALSO IN THIS ISSUE
SOCIAL CONNECTIONS AND WELLBEING
Nurturing your relationships
CONNECTING WITH THE MS COMMUNITY
Learning more about MS Peer Support
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IN THIS ISSUE
CONNECTING WITH US
/// Features
Editorial and advertising enquiries
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Network Editor:
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Ashleigh Chapman T (08) 7002 6500
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E communication@ms.asn.au MS Society SA & NT HEAD OFFICE
Social connections and wellbeing
Samantha’s story
341 North East Road Hillcrest South Australia 5086 T (08) 7002 6500
Connecting with the MS community
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News
NDIS
Free Call 1800 812 311 E msassist@ms.asn.au W ms.asn.au
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Employment
@mssocietysant
TALKING ABOUT YOUR Supporting research DISABILITY YOUR WAY
Cover photo by Gem
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Photographics Design by castondesign.com MS Society SA & NT Privacy Policy: The MS Society SA & NT is committed to the protection of private information. A full copy of the MS Society Privacy Policy is available over the phone on (08) 7002 6500 or online at www.ms.asn.au. Disclaimer: Material published in Network may not be reproduced in any form without permission from the MS Society SA & NT. Any views expressed are not necessarily the views of the MS Society. The MS Society does not endorse any product over another, nor do we receive any commission on sale of items. The MS Society is not liable in the event the product is not satisfactory.
A GUIDE TO SHARING YOUR INFORMATION
Living well
This guide has been created in collaboration with people with disability. Multiple Solutions has worked with Feros Care, an NDIS partner in the community, on the development of this guide. It has been developed as a tool to empower people to have a voice in overcoming roadblocks and to promote self-advocacy and inclusivity.
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THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
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Fundraising
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FROM THE CEO’S DESK
As recent times have shown us, connections with family and friends are so important to our mental and emotional health. The ongoing World MS Day campaign is looking at 'Connections' and how we keep connected to each other and our community. World MS Day is coming up on Sunday 30 May and this is a time for us all to do our part in raising awareness about multiple sclerosis in the community. The ‘Connections’ theme allows us to talk openly about the social barriers that leave people affected by MS feeling lonely and socially isolated. In this edition, we talk about the importance of connections for our wellbeing and ways you can nurture relationships with loved ones. We highlight peer support as a valuable tool in connecting with the MS community and hear from some of our support groups about how they connect.
One of our clients, Samantha shares her experiences with opening herself up to the MS community and how it has had a profound impact on her life. I’ve had a lot of fun connecting with many of you through MS Peer Support groups and at the MS Mighty Swim in February. What an outstanding event and an incredible result raising $134,000 towards MS services and research. I am incredibly thankful that in 2021 our Peer Support groups can get together in person and that we can have these face-to-face events for our community. After a year of uncertainty, it is great to see us well and truly moving forward into our new normal. Our team have entered 2021 as committed as ever to continue making a difference and supporting people living with MS across South Australia and the Northern Territory.
We have been working hard to create a jampacked calendar of wellbeing programs and workshops for you all, with expert health and wellbeing information coming to Adelaide, regional SA and the Northern Territory. I look forward to meeting many more of you in this coming year and hope you enjoy reading this issue of Network as much as I did. TIM RYAN Chief Executive Officer
Let’s chat Tell us about your experience with the MS Society Do you have feedback about a service you have received recently? Please let us know so we can continue to improve and expand our services for people with MS. If there’s something in Network you’d like to know more about, contact us to chat to an MS Society staff member. MS Assist 1800 812 311 msassist@ms.asn.au NETWORK /// APRIL 2021
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MS SOCIE T Y NEWS
YOUR FEEDBACK ON THE MS NETWORK MAGAZINE
The MS Network Magazine was started for the MS community as a regular source of news and information to help people live well with multiple sclerosis. Therefore, we wanted to hear your thoughts on Network so we can continue to provide news that is interesting, helpful and relevant to your needs.
Thank you so much to everyone who responded to our survey. Your feedback on how you would like to receive Network, what you would like to see more of and ways in which can improve is so valuable and will help shape the magazine in the future.
“Thank you for seeking the feedback on what I am sure is a magazine read not only by those of us facing the challenge, but certainly by our spouses, family and others simply seeking to be informed about MS complexity.”
Here’s what you had to say… 72% want to receive the MS Network Magazine three times per year 95% enjoy reading the MS Network Magazine Top 5 topics you want to read about 1. MS research updates 2. Health and wellbeing 3. People living well with MS 4. MS Society services and support 5. MS community news 13% find the magazine difficult to read and recommended a larger font
“Thank you, it reminds me there are people to help me and that there are others having to deal with MS too as sometimes I feel alone. This helps.”
MS TREATMENT UPDATE New MS medication, Kesimpta®, approved by TGA
Zeposia® now accessible on the PBS
The Therapeutic Goods Association (TGA) has announced the approval of a new medication for relapsing MS: Kesimpta®. An application has been made to the March 2021 meeting of the Pharmaceutical Benefits Advisory Committee (PBAC) to have Kesimpta® listed on the PBS. The outcome of that application is scheduled to be made public in late April.
The Federal Health Minister, the Hon Greg Hunt MP has announced the listing of Zeposia® for the treatment of relapsing remitting MS on the PBS (Pharmaceutical Benefits Scheme), effective from 1 March 2021.
We always recommend people living with MS speak to their neurologist about what treatment best suits their individual circumstances.
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WORLD MS DAY, SUNDAY 30 MAY
World MS Day is officially marked on 30 May. It brings the global MS community together to share stories, raise awareness and campaign with everyone affected by multiple sclerosis. The three-year MS Connections campaign (2020-2022) challenges social barriers that leave people affected by MS feeling lonely and socially isolated. SPREAD THE WORD on Facebook and Instagram throughout the month of May
Last year we focussed nationally on connection to self and self-care – taking care of your mental, emotional and physical health. This year we encourage you to think about your connections to friends, family and the MS community. This theme is all about maintaining these important connections and building new ones. This year, the MS Society SA & NT is encouraging our MS Peer Support groups to get together on World MS Day. We’re also planning movie nights and awareness activities in local shopping centres. Follow us on Facebook for updates @mssocietysant
HOW CAN I GET INVOLVED? 1
REGISTER to attend our World MS Day movie nights, visit our volunteers in shopping centres and catch up with your local MS Peer Support group.
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SPREAD THE WORD on Facebook and Instagram throughout the month of May with the hashtag #MSconnections. Don’t forget to tag @mssocietysant
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SHARE AND WIN! Show us how you’re celebrating World MS Day! Snap a photo, share it to Facebook or Instagram and tag us @mssocietysant. We have a prize to give away to one lucky person.
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HOST A WEAR RED FOR MS MORNING TEA or event in the month of May and raise money for the MS Society SA & NT. Contact events@ms.asn.au to find out more.
NETWORK /// APRIL 2021
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MS SOCIE T Y NEWS
FRAN CELEBRATES 25 YEARS WITH MS
Fran is so proud of everything she has achieved since she was diagnosed with MS. From a moment in time that she thought she wouldn’t come back from; she has since achieved goals that she is really proud of. She completed study, started her own business, travelled to England and Europe several times, and was an MS Readathon ambassador educating children at schools – just to name a few! It was for this reason that Fran was determined to get all her family and friends together for a party to celebrate 25 years since her diagnosis with MS. Fran’s loved ones travelled from all over South Australia and Interstate to celebrate this milestone with her. While MS, of course, impacts her life, Fran has found ways to adapt as her hobbies become more challenging. She enjoys sewing and painting but with lessened sensation in the right side of her body, finer details are more difficult. That hasn’t stopped her though. She instead uses a bigger needle with a bigger eye and experiments with larger, abstract paintings using a bigger brush. In recent years, Fran has begun to see the importance of connecting with people on a regular basis as a way to get out of the house and keep her brain stimulated. She likes to fill her time by catching up with friends and taking art classes, and recently has spent time with her local MS Peer Support Group in Victor Harbor. Fran wanted us to pass on a simple message to others living with MS.
Fran says, “There is life after diagnosis.” “I think my life has sort of been divided by before MS and after MS. In the 25 years after MS I’ve certainly achieved a lot, and I’ve definitely had the love and support around me that’s enabled me to do so many things.” THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
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MS FAMILY FUN DAY Thank you so much to all the children and families who participated in the 2020 MS Readathon. All funds raised help the MS Society support families affected by MS. We would love to invite you to this year’s MS Family Fun Day funded by the 2020 MS Readathon! This is a free event that gives children and families the opportunity to spend quality time together and connect with other families affected by MS in a fun, relaxed atmosphere. The MS Family Fun Day will be held at The Beach House, Glenelg on Saturday 14 August, 10am-2pm.
CHRISTMAS FUN!
Come along and join us for a fun family-day out with heaps of activities including: Mindfulness drumming workshop Canvas paint pouring Beginners yoga Mindfulness activity with an MS Nurse Face painting and balloon animals Waterslides, dodgem cars, bumper boats, mini golf, carousel, play castle and arcade games!
MS Family Fun Day at The Beach House, Glenelg on Saturday 14 August, 10am-2pm.
REGISTER NOW to attend the MS Family Fun Day. There are limited spots available so please RSVP by Friday 16 July by contacting events@ms.asn.au
Several of our MS Peer Support groups got together over the Christmas period for a meal and celebration. We heard tales of baking, Kris Kringle, decorations and lots of fun! Our CEO Tim and Peer Support Coordinator Linda joined as many groups as possible. Take a look at the photos they shared with us.
NETWORK /// APRIL 2021
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LIVING WELL
COVID-19 VACCINATION AND MS – EVERYTHING YOU NEED TO KNOW Written by MS Research Australia
Never in our history has there ever been such a mass vaccination program as the COVID-19 vaccination program. There is a mountain of information about vaccines out there and it is often confusing and complicated. Here we try to break down some of the basics on the COVID-19 vaccination and how it will affect people with MS. This article is designed to complement MS Research Australia’s more clinical advice around COVID-19 vaccination for people with MS, which you can read at, msra.org.au/covid-19-vaccinationguidance-for-people-with-ms What is vaccination? Vaccination is the safest way, and sometimes, as in the case of COVID-19, the only way to protect yourself against some specific infections. Vaccination aims to train your immune system against a virus or bacteria that otherwise would cause disease if you were to encounter it. In other words, vaccinations give you immunity to those bugs.
How does vaccination work? There are many different types of vaccines, but generally, they use a harmless form of the virus, or part of the virus to train the immune system without making you sick. The immune system remembers this bug, so if a vaccinated person encounters the virus later, the immune system already knows how to mount a suitable response.
How effective are the different vaccines? Like any medical intervention, no medicine is 100% effective, but vaccines are the most effective way of preventing COVID-19, especially severe COVID-19. There are variations in people’s immune systems, there are variations in the virus caused by mutations, and there are variations in the vaccines themselves. Vaccine “efficacy” is indicated by the percentage
reduction of disease in a vaccinated group of people compared to an unvaccinated group. Among the COVID-19 vaccine candidates, there have been different efficacies reported. This is varied and depends on the vaccine, the study, and the population they are being used in. But generally, they are all considered to have a significant impact on the
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
virus responsible for COVID-19. Previously, diseases such as smallpox and polio have been eradicated from Australia by effective vaccination strategies, and without any other options, COVID-19 vaccination is the only line of defence we have. Vaccination protects yourself and the community around you.
Should someone with MS have the COVID-19 vaccination? It is currently recommended that everyone over the age of 16 years should be vaccinated against COVID-19. There is no specific data relating to the administration of any of the vaccines to a person with MS, but studies in the US, EU and Australia are currently being conducted. However, there is no theoretical reason why any of the presently available vaccines should pose any particular risk to a person with MS. The chances of developing COVID-19 are genuine, and the risks may be higher in a person with MS who also has some disability or other health conditions. The risks in contracting the disease far outweigh any conceivable risks from the vaccines. The current advice is that people living with MS should be vaccinated unless advised not to do so by their treating neurologist.
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Where do people with MS fit into the vaccine rollout?
What is Herd Immunity?
The Australian government commenced vaccinations at the end of February 2021 and have created a rollout plan for the vaccine depending on the level of risk of contracting the disease.
Herd immunity is the idea that if a large enough percentage of the population is vaccinated, it is difficult for the virus to find an unvaccinated person to infect and spread. Not only does this limit the spread of infection but it also limits the chance of the virus mutating or changing. Herd immunity is also essential in protecting people who can’t be vaccinated themselves for various reasons, such as age or immunological diseases. It is currently unknown exactly what percentage of the population needs to be vaccinated to produce herd immunity, but experts believe it to be around 75%.
The first group of people to be vaccinated consists of border and quarantine staff, frontline medical staff, and aged care workers and residents (approximately 678,000 people). The second group contains people with underlying medical conditions, which is made up of around 2 million people. People with MS will fit in the second group for vaccinations.
Initially, the first rounds of vaccines will be made available in a small number of locations, gradually building to around 50 hospital hubs in urban and rural areas around Australia as experience is gained and logistics are organised. Therefore, it is likely that people with MS will need to go to one of these centres to be vaccinated. The location of these centres will be decided by state and territory governments. Later waves are likely to be carried at GPs and other local healthcare clinics and possibly community pharmacies.
MS Australia's COVID-19 web page, is reviewed daily and addresses many common questions about the vaccine and living with MS from the Australian and New Zealand Association of Neurologists. To stay up to date visit, msaustralia.com.au Read the full article at msra.org.au
IF YOU HAVE ANY CONCERNS about vaccination, it is essential to talk to your healthcare team.
NETWORK /// APRIL 2021
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LIVING WELL
SAMANTHA’S STORY From the moment Samantha opened herself up to the MS community through her Instagram blog, sharing her highs and lows with MS, she felt a wave of support and hope. Since then she has dedicated herself to being a support for others living with MS and sharing that hope, as an MS Peer Support group coordinator and most recently joining an initiative with key members of the MS medical community to educate people living with MS. Samantha was born in the UK, getting her first taste of travel on a University exchange program to Europe. It wasn’t long before she caught the travel bug and jumped on a plane to Australia for a 12-month backpacking holiday, where she found her home in Darwin. As a fit and healthy young woman in her mid-twenties, travelling around Australia fruit picking and living an active lifestyle. She was always fit and healthy. She had just decided to give Gaelic Football a try when she noticed changes in her body. During a training session she felt her legs start to buckle beneath her. She felt numbness and tingling as well. Something didn’t feel right. She was no stranger to living with a chronic health condition, having been diagnosed with a chronic blood disorder when she was 15 years old. But her multiple sclerosis diagnosis felt unexpected and scary. She says the biggest mistake she made in that moment was turning straight to Google. What she saw there was people suffering, no stories of hope. She felt frightened and defeated for the first time in her life.
We’d love to share your living with MS story in the next issue of Network! Contact our Marketing team at communication@ ms.asn.au.
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Three years later, her perspective had changed. With some experience under her belt of what living with MS can really be like, Samantha knew she wanted to help people who felt the fear she felt when she was diagnosed. In 2017 she started blogging her MS experience on Instagram as @ms_butterfly89 and she says it was one of the best things she ever did.
Samantha says, “I wanted to lead the way by advocating, informing and get real about my MS experience. I just wanted others to feel hope. I want you to be able to see that it's possible to live a good life with MS.”
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Not long after her blog went live, she nervously attended her first MS Peer Support meeting with our group in Darwin. Samantha was amazed by how welcoming everyone was. The more she continued to open herself up to the MS community, the more she wanted to be involved. So, she offered to help coordinate the Darwin group and start a Darwin peer support Facebook page. It was through her Instagram account that she was approached to participate in the ‘MS Motion: Moving Faster to Protect Brain Health’ initiative. This initiative aims to raise awareness of the positive impact early treatment can have on brain health in people living with MS.
Samantha joined a small group of influential members of the Australian MS community, including people with MS, worldleading doctors, stakeholder groups and MS supporters to review the latest scientific findings and translate these into easy to understand social media resources for the MS community. Samantha’s own MS treatment journey was the reason she felt so passionate about the MS Motion initiative. Last year, she documented her transition to a new MS treatment on Instagram. This transition required extensive planning with her medical team over 12 months. Living with a chronic blood condition in addition to MS, means that
there are less treatment options available to Samantha, so the process was handled very carefully. This initial transition was incredibly hard on her body, but she has since come out the other side feeling really positive about the future. “The experience made me feel very proud of my MS diagnosis, and thankful that I was given a voice to help create those much needed resources to put out into the MS community – resources that will help people like myself to make the best, informed decisions about managing their own health care,” Samantha says. “The guidance from international MS experts reinforced to me, the importance of time and speed in the effective management of MS.
It reaffirmed the importance of taking control of my own MS even though that meant re-thinking my own lifestyle and how best I can adapt to help my body be as healthy as possible.” Over the past few months, Samantha has been actively fundraising for MS services and research. She recently held a Team MS birthday fundraiser and is now participating in the May 50K raising money for MS Research Australia. You can follow Samantha’s journey on Instagram @ms_butterfly89
MS MOTION:
Moving Faster to Protect Brain Health The ‘MS Motion: Moving Faster to Protect Brain Health’ initiative was built by the MS community, for the MS community, to raise awareness about how early intervention and prompt treatment can improve the lives of people with MS.
The initiative encourages us to share this message with the wider MS community, educating people with MS about the impact on brain health over time and how early effective treatment may prevent MS from getting worse.
To learn more or to join the initiative and help spread the message, go to msmotion.com.au
NETWORK /// APRIL 2021
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LIVING WELL
SOCIAL CONNECTIONS AND WELLBEING Strong ties with our family and friends provide us with feelings of happiness, security and support. Nurturing these relationships can give us a greater sense of purpose and allow us to feel stronger in our self and self-worth. Our Nursing team say, ‘MS does not exist in a bubble’. Those with MS know that, while this condition affects them in ways many people cannot understand, it is not only the person with the disease whose life is touched. Their loved ones are also affected, and, frequently, that brings about changes to social dynamics or the way family members relate to and interact with one another. But not all change will be negative. While there may well be challenges for people affected by MS, there are also times when MS might be a blessing in disguise, binding families and friendships together with a bond that cannot be broken.
Communication Sometimes, loved ones may attempt to help you when that really isn’t what you need at the time. Or there may be other times when your loved ones may not know what you need, and they might pull away when you really need support. This is where open and honest communication is so important.
Children of all ages will also pick up that something is wrong. It is best to be open with children to make sure they hear it from you first. Your actions, more than your words, will tell a story that your children can believe. Get out and be as active as you can, participate as much as you can and take care of yourself as only you can.
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Get out there! Sharing good times with others and being supported in the not-so-good times is what good friendships are about. There is a saying that ‘friends are good medicine’. Which means having several close friends is very good for our mental health and wellbeing. Here are some ideas to be more socially active: Make a list of all friends and family members who are supportive and positive. Create a separate list of people who you need to stay in touch with regularly, such as parents, a close friend, your child who lives far away or an aging relative who lives alone. Make a commitment to call, email or get together with them on a regular basis. In cases of long-distance use social media to keep in touch. Reach out and make a least one emotional connection each day. Share what is on your mind honestly and talk about your concerns openly. Don’t hesitate to ask for help.
Ask people what they think about your situation and show them you value their opinion. Listen and respond. Ask about someone else’s day. Follow up on previous conversations. Offer help or advice if asked. Listening to other people’s concerns can often shed light on your own challenges. Ask your friends to introduce you to other friendship circles so you can meet new people and try new activities. Join an MS Peer Support group or another local community group. These groups are a great opportunity to meet new people, share common interests and hear about situations similar to yours.
‘friends are good medicine’.
Ask for help If you are feeling lonely or isolated from family and friends, there are professionals you can reach out to for advice and support. Speak to an MS Nurse, GP or Social Worker to discuss family dynamics, changes in your normal routine and any other feelings you may have.
Your GP, MS Nurse, Physiotherapist or Occupational Therapist can give you strategies to manage any symptoms that may impact your ability to get out and participate in activities. Always keep your doctor up to date on how you feel, physically and mentally. They may find that a combination of counselling and prescription medication may be just what you need. NETWORK /// APRIL 2021
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LIVING WELL
Expert health and wellbeing education for people living with multiple sclerosis
PROGRAMS AND WORKSHOPS
Sleep and Mindfulness 3-6 week program Weekly on Tuesdays 27 Apr - 11 May, 6:00pm 18 May - 1 Jun, 5:30pm Mitcham Memorial Library Join us for three weeks of sleep workshops followed by a three-week mindfulness course. Come along for the full six weeks or choose a three-week course to suit you. Learn techniques to manage stress and find relaxation.
Wellness Series 2 week program Weekly on Saturdays 1 & 8 May, 10:00am Country Wide Health, Nuriootpa This two-week Wellness Series gives you the tools to live well with MS. Join us for expert advice on MS Get a Head Start, exercise, mindfulness and fatigue management.
MS staff visit Darwin 27 & 28 May Anglicare, Winnellie Join us over two days for expert advice on diet, stress management, falls prevention, fatigue management and sleep hygiene. There will also be limited one-on-one appointments available with an MS Nurse and an NDIS Support Coordinator. Thanks to grants from the NT Department of Attorney General and Justice’s Community Benefit Fund.
MS staff visit Alice Springs 16 & 17 June Book 1-on-1 appointments with specialist MS Staff at your home. There will also be limited appointments available with our MS Nurse, Physiotherapist and Wellbeing and Social Support Coordinator (NDIS support). Thanks to grants from the NT Department of Attorney General and Justice’s Community Benefit Fund.
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WEEKLY EXERCISE PROGRAMS
Pregnancy and MS Thursday 24 June, 6:00pm Mitcham Memorial library Join our MS Nurse, who is also an experienced fertility nurse, for information and guidance around preparing for pregnancy, pregnancy, breastfeeding, and MS treatments and pregnancy.
MS Falls Prevention 6 week program Weekly on Tuesdays 29 Jun - 3 Aug, 10:30am Venue TBA Learn exercises and strategies to improve your balance and mobility, and reduce your risk of falls in this six-week athome program led by an experienced neurological physiotherapist.
Contact MS Assist to register your interest for our upcoming programs and workshops!
Virtual MS Falls Prevention 6 week, online program Weekly on Wednesdays 30 Jun - 4 Aug, 10:30am Learn exercises and strategies to improve your balance and mobility, and reduce your risk of falls in this six-week athome program led by an experienced neurological physiotherapist.
Virtual MS Exercise Groups Tuesdays and Fridays, 9:30am Our MS Physios are running 30 minute online, exercise classes via Zoom. Exercises can be done sitting or standing, and focus on mobility, strength and balance.
Hydrotherapy Daw Park, Klemzig and Victor Harbor Water based, group exercise classes held in three location in Adelaide and regional South Australia.
Gym classes with a personal trainer
Virtual Yoga
MS Society SA & NT, Hillcrest
Mondays 1pm, Wednesdays 6:30pm & Saturdays 9am
Personalised exercise sessions with a personal trainer using specialised, accessible gym equipment.
Join us for virtual yoga classes via Zoom. Learn yoga poses and breathing exercises from qualified yoga instructors.
Exercise classes Aldinga, Nuriootpa, Payneham, Port Pirie and Reynella Group exercise classes held in various locations in Adelaide and regional South Australia.
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LIVING WELL
CONNECTING WITH THE MS COMMUNITY
Research shows people cope better with chronic conditions when they’re open with others about their fears and concerns. We have 22 MS Peer Support groups meeting at various locations in Adelaide, regional South Australia and Darwin. Groups usually meet monthly over coffee or a meal. Some groups gather to discuss specific multiple sclerosis issues and others get together for activities such as tennis and crafts. As we draw our focus to building connections in 2021, we want to shine the spotlight on a few of our MS Peer Support groups.
If you have an idea for a new MS Peer Support Group, please contact MS Assist on 1800 812 311 or msassist@ms.asn.au
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MOUNT BARKER Mount Barker Support Group In February 2014, David founded the Adelaide Hills Peer Support group which has now grown to 18 members who all meet monthly for a meal and conversation. One of the amazing things about this group is that they have all grown to be good friends, helping each other out with various projects and fundraising. David says the group is all about just having a fun night out with some good friends. There is never any pressure for people to talk about their MS, but if they feel comfortable, they know they are talking to a group who is ready to listen and offer support.
Barossa Support Group The Barossa Peer Support group is one of our longest standing groups having been getting together for about 40 years. The group love to get together for coffee and lunch every month. The group's BAROSSA coordinator Penny says it’s all about friendship and fellowship, not just for people living with MS but also carers and family members who are able to share their challenges too. They give each other little hints on different things that can help with MS, supports they are using and gadgets that have worked for them.
Regr initserteset r you
Creative Writing Group Carolyn Cordon is a writer, poet and editor. She has had eight books published including two poetry collections and a selfpublished memoir about her life with MS. Carolyn is interested in running regular creative writing sessions with members of the MS community, at the MS Society office in Hillcrest or at other Adelaide venues. If you are interested in joining a Creative Writing Group for people with MS, please contact MS Assist.
Henley Beach Tennis Group – Break Back Program Francy is a qualified tennis coach and this year decided to share her passion with others living with MS. Francy says that tennis has been the best thing for her, not just her career but her mental health too, so she took some inspiration from her situation and formed the ‘Break Back Program’. Once a month the group gets together for tennis followed by some time to socialise. They have a drink, play some lawn games and have a chat. Everyone is welcome to share their stories, or just sit and listen.
HENLEY BEACH NETWORK /// APRIL 2021
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MS PEER SUPPORT
Join a support group in your area
REGION
SPECIAL INTEREST
CONTACT
PHONE NUMBER
Adelaide CBD
Workers
Jess
0403 155 696
Barossa
Penny
0488 952 211
Clovelly Park
Christine
0408 808 284
Darwin
Sarah
0439 885 604
Gawler
Helen
0403 295 348
Gawler
Evening group
Helen
0403 295 348
Henley Beach
Tennis Group
Francy
0432 333 511
Kapunda
MS Assist
1800 812 311
Kidman Park
Enza
0433 972 312
Modbury/Gilles Plains
Peter
0418 206 163
Karen
0458 445 503
Mount Barker
David
0410 451 301
Mount Gambier
Jim
0409 336 455
Naracoorte
Kay
0407 615 118
Noarlunga
Jude
8322 5441
Port Pirie
Anne
0448 321 610
Riverland
Crystal
0418 690 013
Strathalbyn/Goolwa
Jill
0428 843 327
Pam
0412 190 609
Tailem Bend
Sue
8572 3914
Victor Harbor/Encounter Bay
Ros
0458 541 774
Tony
0466 409 289
Morphett Vale
St Morris
Craft Group
Overcoming MS
Under 37s
FACEBOOK ONLINE PEER SUPPORT GROUPS My Society – People Living with MS This is a private and safe place for people living with multiple sclerosis in SA and NT to chat, seek advice and share stories. Family and Friends of People Living with MS This is a private place for family, friends and carers of people living with MS to chat, share information and connect with others who are supporting someone with MS. THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
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MAXIMISE YOUR HEALTHCARE APPOINTMENTS Management of your MS is a team effort with you in charge.
It’s important to discuss all health concerns with your healthcare practitioner and ensure you get heard. However some people can feel dismissed or intimidated during healthcare appointments, whilst others stay quiet, aren’t sure what to say or don’t want to make a ‘big deal’ of a health concern, even though their symptoms are troubling or getting worse. Here are 10 strategies to help speak up and maximise your healthcare appointments. 1
Book a long appointment. Ensure you have adequate time to discuss your concerns but make sure to ask and understand the costs first.
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Be prepared. Write a checklist of questions, medications and any prior tests. Describe how you feel, your symptoms, include any changes and when they occurred.
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Expect your GP... to examine your neurological system and discuss any findings and how they relate to any other health conditions you might have.
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It’s ok to speak up. Many people feel emotional and struggle to be assertive or clear about a health concern. Be open, voice your feelings and explain the impact on your daily life.
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Ask your GP... what sort of investigations or specialist referrals could assist in addressing your concerns and the likely cost.
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Understand the next steps. Ask how the process works and what you need to do for each matter raised. Get info to read at home about being a patient, tests, results and/or diagnosis.
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Stay calm and breathe. Take your time and refer to your notes and questions. Speak calmly and clearly. Explain how you’re feeling and discuss what’s best for you. Clarify your expectations. What would you like from the consultation? Write it down in advance. Being certain will help get the outcome you want from the appointment.
If you don’t understand something, ask your GP to repeat or rephrase it. At the end of the appointment ask for a run through of key points again.
10 Seek clarification and/or a second opinion. If you don’t feel your concerns have been addressed, it’s ok to re-state questions. You may wish to seek a second opinion.
NETWORK /// APRIL 2021
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LIVING WELL
EDUCATION. SUPPORT. UNDERSTANDING.
The important role of an MS Nurse
MS Nurses are passionate about supporting you at all stages of your life with MS. They are there to provide support with managing symptoms and improving your quality of life as well as ensuring you have quality information and emotional support available when you need it.
An MS Nurse can provide advice, tools and resources to tackle issues that arise, and their hope is to support and ultimately empower you to live as well as possible with MS. Sometimes this involves connecting you with other health professionals and services suited to your needs.
You will no doubt go through many changes in your life with MS and MS Nurses can provide support and specialist information when it comes to symptoms, treatments, managing relapses, planning for pregnancy and making lifestyle changes that can have a long-term positive impact on MS.
Emotions vary when a person first receives the diagnosis of MS and feelings of uncertainty, shock and anxiety are common. MS Nurses are often the first point of contact after a person is diagnosed by a neurologist, and are here to provide support, reassurance and reliable education.
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Short-term counselling can be provided for people who are experiencing feelings of loss and grief following a diagnosis and who may need extra support. A Continence Nurse can also help to manage any bladder and bowel concerns. We are very fortunate in Australia to have so many affordable treatments available for MS. This means that, unlike even a decade ago, there are more options available. There is so much information to absorb in collaboration with the neurologist and medical team that this can become overwhelming to process, especially in the early days.
More discussion and information from a nurse can help clarify thoughts and realistic expectations. An MS Nurse may also prompt you to consult your neurologist again when it becomes necessary. Your MS management plan may need to be adjusted if you are going through life changes, or if you are experiencing new symptoms or relapses. MS Nurses are here for you, providing knowledge, support and understanding at different stages of your journey with MS. You can speak to an MS Nurse whenever you have a question or concern by contacting MS Assist on 1800 812 311.
A MESSAGE FROM OUR MS NURSES
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, Hi everyone
NETWORK /// APRIL 2021
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RESEARCH
HOW DO ADDITIONAL MEDICAL CONDITIONS IMPACT A PERSON’S MS?
Written by MS Research Australia
The Australian MS Longitudinal Study (AMSLS) is MS Research Australia’s collaborative research platform that has been running for almost twenty years. Our goal is to provide real-life data on Australians living with MS to assist medical and support services in providing better support for people with MS, their families and carers. In recent years there has been increasing interest in the role of additional medical conditions (or “comorbidities”) in people with MS. There are many reports that they can delay a MS diagnosis, alter the progression of disability, affect treatment use, limit physical activity and significantly reduce quality of life. Three new AMSLS studies by Dr Lara Lo from the University of Tasmania published in the Journal of Neurology investigated how other medical conditions impact Australians living with MS. Does having MS lead to a greater chance of having other medical conditions? The first study surveyed additional medical conditions in people with
MS in Australia. Of the 19 conditions analysed, 14 of these were significantly more common in people with MS than in the general population (after taking into account the effects of age and gender). These included cancer, heart and vascular diseases, anxiety, depression, and gastrointestinal disorders. There was no difference in the prevalence of these medical conditions between
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
relapsing- and progressiveonset disease, but the prevalence was higher in those with a longer duration of MS. MS might contribute to the risk of developing other conditions, or there might be shared factors that predispose people either directly or indirectly to several conditions including MS.
Will additional medical conditions impact MS symptoms? The second study examined the impact of additional medical conditions on the severity of MS symptoms. The researchers found that MS symptoms were more severe in people with a higher number of other medical conditions, with the greatest effects on depression, anxiety and pain.
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When these conditions were analysed individually, mental health disorders (such as diagnosed depression) and musculoskeletal disorders (such as osteoporosis) had the most influence on MS symptoms. Mental health disorders were linked to increased severity of MS symptoms including anxiety, cognitive issues, fatigue and sexual dysfunction; while musculoskeletal disorders were associated with increased pain, walking and balance issues, and bowel and bladder issues.
Do additional medical conditions impact quality of life? The final study measured quality of life in people with MS, including factors such as happiness, coping, relationships, self-worth, mental health, independent living, senses and pain. Not surprisingly, having a higher number of additional medical conditions was associated with reduced quality of life, with mental health disorders having the greatest impact, and musculoskeletal disorders the second largest contributor.
What does this mean for people with MS? These studies highlight the huge impact additional medical conditions have on a person’s MS and their quality of life, as well as the importance of identifying and actively managing these conditions. Early and routine screening for other medical conditions should be integral to monitoring. Mental health and musculoskeletal conditions had the greatest impact for people with MS, so successful monitoring and management is vital to improving quality of life.
For more information on these, and other lifestyle factors that can be modified for optimal management of MS, please see MS Research Australia’s free guide: Adapting your lifestyle: a guide for people with MS. For more MS research news, visit the MS Research Australia website, msra.org.au
Our goal is to provide reallife data on Australians living with MS to assist medical and support services in providing better support for people with MS, their families and carers.
MS Research Australia and MS Society SA & NT gratefully acknowledges the nearly 3,000 Australians with MS who generously donate their time and data to the Australian MS Longitudinal Study (AMSLS) to support evidence-based management of MS in Australia. For more information or to register please visit msra.org.au/amsls
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E M P L OY M E N T
TALKING ABOUT YOUR DISABILITY, YOUR WAY GUIDE Multiple Solutions, the MS Society’s Disability Employment Service, has teamed up with people living with disability to develop a practical guide to help you on your path to achieving your employment, study or volunteer goals. The ‘Talking about your disability, your way’ guide provides tools to assist you to discuss your MS and identify and articulate your goals, and the supports available to help you achieve them.
MANAGING YOUR MS AT WORK When it comes to managing your MS at work so you can stay there, it’s important to identify your goals and the support you may need to achieve that goal. Often this involves deciding whether you want or need to share information about your MS. What is your goal? Identify your goals for employment, study or volunteer work and how to make them achievable. To reach these goals, time frames need to be set so that you can keep on track and motivated to achieve them by the deadline.
TALKING OUR ABOUTILYITY DISABWAY YOUR
INFORMAT
Sharing information
Who will support me?
Think about what possible support you may need to achieve your goal. What are the roadblocks and how can you adjust to overcome those roadblocks?
A supporter is someone helping you to understand and put into place the supports you might need to reach your goal. As goals can have many steps you may need to have multiple supporters to help achieve your goal.
Sharing information about your MS is completely up to you. It is important to understand that sometimes we need to share information legally to an employer to keep ourselves and everyone safe. Other reasons people share information is to gain support for adjustments in the workplace or for learning.
The guide can be used as a working document, with pages to take notes and various tools to help you better understand and gather your thoughts. Use the guide independently or with someone who is supporting you. The guide aims to empower people to have a voice in overcoming roadblocks and to promote self-advocacy and inclusivity. Multiple Solutions has worked with Feros Care, an NDIS partner in the community, on the development of this guide.
It is important to identify your goals and the support you may need to achieve that goal.
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FOUND ONLINE
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A GUIDE TO
SHARING
multiplesolutions.com.au/talkingabout-your-disability-your-way-guide
A supporter can be a family member or friend, a paid support such as a support worker or can be someone helping you navigate a service such as employment or the NDIS e.g. an Employment Consultant, Local Area Coordinator, Employer, Co-Worker, Teacher/ Student Support Officer or Volunteer Buddy.
NDIS
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UNDERSTANDING YOUR NDIS PLAN Your NDIS plan gives you access to the supports and services you need to live well and pursue your goals. These supports may change from plan to plan as your needs and goals change. Your NDIS plan will be based on the discussion you had in your planning meeting and includes:
Your goals This section includes the current goals you would like to achieve as part of your plan and the long-term goals you have identified for your life.
Funded supports This section tells you what funding you have been allocated in each support category and what this funding is for. You may not have all the support categories funded in your plan. This will depend on your individual needs.
There are three support categories: Core Supports budget Core Supports are a flexible budget used to support your everyday needs such as daily activities and personal care; participation in social and community activities; and every day, low cost items or products you may need. Capital supports budget Your capital supports budget is for purchasing one-off items such as equipment, technology, or home or vehicle modifications. Capacity building budget The capacity building budget is to fund skill building activities, training and learning you need to achieve your goals and is allocated across various categories that align to your goals.
Who can help me? Your NDIS Support Coordinator or Local Area Coordinator will help you start your NDIS plan and understand what supports and services you can pay for with your NDIS funding.
Your MS Services MS Society SA & NT is a registered provider of NDIS services offering a range of services and support to people living with multiple sclerosis which may be funded in your NDIS plan. Our NDIS services include: NDIS Support Coordination Physiotherapy Individual assessment or consultation with an MS Physiotherapist, rehabilitation sessions, MS Society gym sessions, hydrotherapy classes, online yoga and exercise classes, and the MS Falls Prevention program. Occupational Therapy Individual assessment with an Occupational Therapist. Continence Support Individual continence assessment with an MS Continence Nurse, product advice, and catheter changes and education.
What if I don’t have an NDIS plan or my funding doesn’t cover these services? The MS Society SA & NT are able to offer a range services for free or subsidised, to people with MS who do not have NDIS funding, thanks to the generosity of our fundraisers and supporters.
For more information about the services available to you, contact MS Assist.
NETWORK /// APRIL 2021
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FUNDR AISING
MS MIGHTY SWIM RAISES OVER $134,000! We were so grateful that this year’s MS Mighty Swim was able to go ahead with the current COVID-19 restriction in SA. There were some changes to the day but ultimately the event still had the same incredible atmosphere with 430 swimmers in 17 teams fundraising for people living with MS in South Australia and Northern Territory. The event was held at Unley Swimming Centre on 13 and 14 February, with teams taking on the challenge to swim the most lap in 24 hours. We love the sense of community all coming together for one reason, to support people living with multiple sclerosis. We would like to acknowledge once again the ongoing contribution of the City of Unley. A very special thanks to the Unley Swimming Centre staff who have supported the MS Mighty Swim for 16 years working tirelessly to ensure the event is safe and runs smoothly. Thank you to participants, donors and volunteers for helping to make the 2021 MS Mighty Swim a huge success.
MESSAGE FROM TEAM MS CAPTAIN, LEE O’CONNELL The 16th annual MS Mighty Swim was another outstanding success. Weather for this year’s event was cooler than the last couple of years which meant the late evening and early morning shifts were a bit challenging, however during the day it was very pleasant both in and out of the pool. Unfortunately, one of the consequences of the COVID-19 restrictions was that the yearly catch-ups of swimmers in Team MS were limited and sadly some of you missed seeing others you
have swam with in previous years – hopefully next year we can all be one big, happy family again! One of the truly amazing aspects of the MS Mighty Swim is that people living with MS, who are the beneficiaries of the funds raised, are also amazing participants and fundraisers themselves. Team MS has been an important part of the MS Mighty Swim since the beginning. The MS Mighty Swim itself is an extremely successful fundraising event
ALISON DIVES IN FOR MS
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Alison does hydrotherapy every week to help her MS symptoms and her new love of the water led her to join Team MS in the MS Mighty Swim in 2019! In her third MS Mighty Swim, she swam 6km and raised $900 for people living with MS. “I did the Mighty Swim, and I didn’t think I’d be able to do any of it, but I did! I had a pool noodle under my arms, I had flippers on my feet and I kind of doggy paddled through however many laps I ended up doing. Just being able to give back and raise some money – It was just such a good weekend.” for the MS Society, a fun swimming event for people of all ages and swimming abilities, and it has done a huge amount to raise awareness of MS in the community. What makes Team MS unique, is that it motivates and enables people living with MS to achieve personal goals often way above what they ever imagined or expected they could do. There are many long-time, and first time, Team MS members who have said that participating in this event has been a life changing experience. Our team spirit of encouragement and
support means, in the pool, it is willingness to give it a go that demonstrates ability and achievement. As captain of Team MS for the last 16 years it is our team member’s stories and achievements that motivate me to do whatever I can to help them fulfil their goals and continue to raise money for the MS Society. This year Team MS has raised its highest total ever of $20,871! We swam an equally impressive 852 laps (over 85km) between us all. What an amazing fundraising effort by all members of Team MS. Those, and all teams, fundraising efforts
have culminated in the MS Mighty Swim’s impressive total and we are so grateful to all our generous donors who helped us achieve this result. Well-deserved congratulations and a huge thank you to the organisers, all our dedicated swimmers, supporters and sponsors.
I am looking forward to being involved again in the MS Mighty Swim in February 2022, hopefully in a post COVID-19 environment. As always, it is a privilege and a pleasure to captain a team of such inspirational participants.